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As I walked through Newton Abbot yesterday I felt my legs getting heavier, but the most disturbing thing was my head was getting even heavier. they talk about the weight of the world being on your shoulders but this now applied to my head. it felt as if I couldn't lift it and was being pressed down by some incredible invisible force, my eyes were glued to watching my feet as I struggled to put one foot in front of the other. Elaine noticed straight away, held onto me and insisted that was enough and we headed back to the car. I hadn't walked that far but I had felt a little "Strange " most of the day. By the time I got back to the car I was totally exhausted, shaking and so out of breath, my head felt like it was full of cotton wool and I couldn't get my words out properly,

Lewy Body`s had struck early in the day.................

Unfortunately, it didn't come by itself, accompanying it was what I call my "Concrete Overcoat" Some people call it the " Big Black Dog, most know it as depression. I was being assaulted, mentally and physically from all sides, as you all know, I also have heart failure and have so much trouble breathing sometimes, yesterday, as they day, felt like the "Perfect Storm"

Not much was said on the way back from Newton Abbot to Torquay, about a twenty-minute journey, don't get me wrong, it wasn't for the want of trying !! But hard as I tried, just a mumbled jumped up set of words came out that even Elaine couldn't understand. I literally staggered out of the car as if I had been drinking as Elaine held onto me as tight as possible as we approached our flat. As soon, as I got in she, sat me down, took off my shoes and helped me to bed "best place for you at the moment i can recall her saying as I fell into a black depressive sleep, which was fitful and littered with disturbing dreams and even more disturbing and dark ridden thoughts.

An hour or so later I awoke with a thumping head and feeling very disorientated, so very low and couldn't see any light what so ever at the end of this everlasting tunnel called dementia and depression. I firmly believe the two are inexplicably linked and when they come together, all seems lost. The rest of the night was sat in almost silence and I am so grateful it was, because my ANGEL Elaine just has that knack of saying the right things at the right times, when to say something and when not to, bedtime came and as it did I dreaded, once again what was to come

It is so unusual
On many websites like this 'we' are on the outside looking in - as carers - but to be on the inside looking out is a totally different aspect - which I now understand after reading your post. Thank you for letting us share how you feel, and being so expressive and eloquent in that sharing.

My partner has multiple health issues and mixed dementia - all of which have happened in the last 9 months - this time last year our lives were so different.

I am not saying I understand how you feel, but I do have a better understanding.

WHAT YOU HAVE ALL BEEN WAITING FOR AND A DAY EARLY !!
Here it is, the song we have been telling you about for so long is now AVAILABLE TO DOWNLOAD WORLDWIDE, you can also hear an excerpt before you buy, PLEASE PLEASE Let me know what you think
ONLY 79P !!! (Feeling really nervous now) and please share with all as ALL proceeds go to Purple Angel dementia campaign.

As I walk through the street, I am there, yet I am not,
You see me, even hear me, yet I don't see you
I am not in your world, I am NOT in my own world,
I am in dementia`s world where nothing is real,
YOU are not, THANKFULLY
I stand and stare at the shop windows, but I don't see me,
Sometimes I see a younger me, sometimes an older me,
But I NEVER SEE ME, never the REAL ME,
You hear me speak, but sometimes I don't hear you,
I want to hear you, I want to hang on to every word,
I want this world to make sense again,
But of course, it doesn't, not anymore,
I see where your going, but I don't know where I am going,
I hear you laughing, and yet I cannot laugh,
Dementias world is devoid of all sense, humour, and direction,
I walk in a maze of uncertainty and loneliness,
Each step is so hard some days,
Each step feels like a mile walked,
I stumble and stagger as if walking over rough terrain,
Sometimes falling over absolutely nothing, in a heap on the floor, in a heap of embarrassment,
Never wanting to get up again, hoping dementia`s world will swallow me up,
Sometimes I am here, sometimes not,
Anf yet I feel I am everywhere, but yet? I am sadly NOWHERE

Hiya on April the 8th of this month i asked for your help to create a book called "Dementia, Before AND Beyond Diagnosis" (link below) and even though i have had a few replies, there were not enough to fill a book with sadly, but as always i am not giving up, thank you to the few that sent me thier stories but we need more, so many more, stories of HOPE and overcoming the obstacles after a diagnosis, stories of how life can STILL be as full after diagnosis and just as important stories of people`s lives BEFORE the diagnosis and what they did we need to show people that they too can see PAST the illness and see the person, This is how we would like to book to look, please send me your stories to my e mail below (Two rr`s in norrms)

For the first part of the book Please send your stories of positivity, jobs family, Laughs, hobbies ETC along with
date of birth
Date of passing,
how long with dementia and what type
and one Best Pic to

I think we all fear at one time or another that when we go to bed we will never wake up. A startling statement I know, but last night I had one of my darkest nights ever and they do seem to be getting worse. I am not talking about having hallucination`s last night, or nightmares, but NIGHT TERRORS, and even worse one continuing night terror that went on for what seemed like hours. The person who said dreams last mere seconds is HUGELY MISTAKEN in my eyes because he / she doesn't see what I see!!

My night terror last night started with me being alone in a room with screaming coming from all sides. My best friend then walked in (he has long since passed) only to be followed by a huge dark Character wielding a long knife who started to attack him in the most grotesque way (I will leave the details out) I tried to stop him but it was far too late as I could see .then he turned on me attacking me again and again, i could see the damage he was doing but felt no pain, but the scene in front of my eyes was as bad as it gets.

I crawled out the door only to find I was stood on a market covered in blood and I was looking for someone I had lost, someone very close to me and dear but couldn't quite make out who it was. A work colleague from a different lifetime appeared at my side started to punch the wall before turning on me, the only way I could stop him was to grab him by the throat and hold him on the ground. So many hands were punching me now from above, grabbing me, pinching me, and their feet rained in hundreds of kicks, I was screaming for help but nobody came.

This and much worse happened next and I don't really want to give you all nightmares but this is just a small snapshot of my night terrors. Sometimes I am up and out of bed for hours before I come on the computer. Some have said I am (LUCKY) as some cannot function at all after having such bad nights, I say to them please don't use the word LUCKY as its so inappropriate to whats going on. fact is, some people are either farther down the road with this disease or have a different strain and yet the same type of dementia, please believe me when I say at NO TIME do I feel "LUCKY" at any time.

Yes I have taken all medication to stop these and yes I know all about the herbal side of it, but NOTHING STOPS them, how can they ?? how can they possibly invent a tablet that stops you dreaming ????? Answers on a very big postcard please.. The worrying thing was I used to wake up many times a night having different ones but lately, I seem to be "locked In" a night terror which seems to go on and on.

Do I fear one day I will not wake up? I have to say that sometimes i think that death would be a blessing compared to this, but my biggest fear ????

Is one long continuous night terror when AND IF dementia finally wins the fight and takes over my mind.

Still, I am here TO FIGHT ANOTHER DAY

Norrms

Diagnosed with Alzheimer's 10 years ago but re-diagnosed with Lewy Bodys dementia five years ago

Please remember me for who i am
The Father, the Mother, the Lady the Man,
Not the person that i became,
The one that couldn't remember your name,
My life is worth much more than that,
After all this time don't leave me flat,
Families raised and friendships made,
Working for years in the trade,
Going out, having fun,
Long summer holidays, in the sun
These last few years are so short,
What about the others? I retort !!
Please don't remember my dementia days,
They are nothing but a distant haze,
So,
Please remember me for who i am
The Father, the Mother, the Lady the Man,